Blessing in Disguise - Celebrating the Success of a Regionally Focused End-of-Life Communications Program

Supportive Voice Vol. 11 No. 1 Winter 2006

by Scott Foster, MD

Dr. Foster is a physician from the United Kingdom. Educated at the University of Glasgow, he is currently working as a graduate-student intern in regional planning at Providence Health System in Portland, Oregon. He is also studying for a master's degree in Public Health: Health Care Policy and Management at Oregon State University.

There are many reasons why people engage in communication. It's an inescapable activity in which we all participate on a day-to-day, if not a minute-to-minute basis, and constitutes at least 95 percent of the work that's done in health care. Despite its seemingly fundamental importance and ubiquitous role, our ability to communicate effectively often fails us when we need it most. In fact, the inability to communicate confidently is often cited as a major barrier to the delivery of appropriate end-of-life care services. It seems ironic that such a universal human activity should stand in the way of such a uniquely human behavior: displaying compassion.

To help remedy this situation, an initiative was undertaken by Providence Health System in Portland, Oregon, designed to improve end-of-life care communications skills for people from diverse health care backgrounds. The results have been phenomenal. As the term of this train-the-trainer series comes to a close, it seems apt to reflect upon its successes by highlighting the impact it has had on the lives of those who've graduated as well as those whose lives are touched by these graduates on a daily basis.

June 24, 2005, marked the last and final "Bayer 'Train-the-Trainer': Conversations at the End-Of-Life" course to be held under the auspices of Providence Health System in Oregon. Twenty-three final graduates took the total number to 96, most of whom, but not all, are affiliated with either Providence or the Veterans Administration Hospital in Portland.

The training, consisting of six separate, one hour-long modules, aims not only at educating professionals to be effective communicators but also focuses on teaching the trainees to become future experts and educators themselves. Although many participants had already had either the End-of-Life Nursing Education Consortium (ELNEC) or the Education on Palliative and End-of-Life Care (EPEC) training, which include communication modules, the benefits of more intensive training were anticipated.

The topics covered include areas such as defining palliative care and "a good death," planning for advanced illness, preparing for death and death notification, managing family anger and mistrust, as well as dealing with intercultural differences and conflict. A varied set of educational media are used such that, following a brief didactic presentation, there is a short discussion and video giving the introduction to a clinical scenario. The experience culminates in a role-play through which individuals experience first-hand how it feels to be a clinician, a patient, or an observer. The role-play is an important facet of this training as, to quote a Spanish proverb, "It's not the same to talk of bulls as to be in the bullring."

Providence was particularly fortunate to have benefited from the expertise of Geoffrey Gordon, MD, the original author of the materials and previous course director at the Bayer Institute for Health Care Communication, who was lead coach for many of the training sessions. Dr. Gordon, currently associate professor of medicine and psychiatry and associate director, Center for Ethics in Health Care, at Oregon Health & Science University, was instrumental in making this program a success and has shown a level of dedication to this role that is nothing short of commendable. The graduates extend their gratitude to him wholeheartedly.

The Response
After a round of questioning to elicit feedback from a small group of graduates, it quickly became apparent that the benefits of this training initiative have run far deeper than providing the skills and knowledge to effectively communicate. In fact, some of the care processes in place at Providence have been changed for good and simply attending the course has been a practice-changing experience for many. There are several commonalities to the responses obtained so far and these can be summarized in four broad sentiments: camaraderie; sympathy; motivation; and a life-changing event.

Certainly one of the most salient features was the sense of camaraderie that developed almost instantly when these otherwise loosely related people from all kinds of health care backgrounds were brought together to learn about and explore such a fundamentally difficult topic. A sense of relief and support grew from discovering that even those with significant experience still struggle with talking about death-related issues, so no matter what each person's professional role, they all were in this together.

Similarly, given the broad range of professionals present, some individuals developed a significant sense of sympathy for those in other health care disciplines, not to mention the patients they deal with on a day-to-day basis. In this respect, it was a great equalizer among professions and brought down the interdisciplinary barriers that can otherwise inhibit empathetic responses. The role-play element allowed people to experience first-hand just how difficult it is to be on both the delivery and receiving ends of these life-altering conversations. Nurses and social workers especially understood why other clinicians often avoid these conversations because, even with the best of intentions and purity of heart, language can fail to encompass everything that we want to say or what needs to be said. Similarly, clinicians found that a disease-oriented dialogue, even the most thorough, leaves patients with more unanswered questions than were actually addressed.

Regardless of the nature of their professional background, graduates now know that effective communication is learned by practice and through the development of a repertoire of almost "scripted" statements. This brings talking about death in line with other subjects over which we seek to have mastery and, as the saying goes, "It's always better to dig your well before you're thirsty!"

Armed with this understanding, many of the graduates have been motivated and encouraged to help their colleagues by ensuring the teaching continues. Physicians, nurses, and nursing educators have integrated the modules from the Bayer program into other, already established training days or created new ones. Marian Hodges, MD, integrated content from the module into her teaching for residents within a week of participating in the train-the-trainer program. The flexibility of the program's modular approach has been of endless value. There also is currently an initiative to ensure that nurses on different shifts have the opportunity to experience the training. Since each module only lasts one hour, they are being offered as a series easily spread out over many weeks. Each session occurs at several times during the day as well as up to 10 p.m., ensuring the night staff is not excluded from this opportunity. Because the modules are accompanied by prepared materials, there is less of a time-barrier in setting up the sessions, although the materials are adjustable enough to be tailored to a particular audience and the preferences of the trainer.

As a result of this flexibility and integration into diverse arenas, there have been several positive and potentially permanent changes in how professionals are educated and patients are treated at Providence. Carol Baird, MD, one of the first physicians in the Providence system to be certified in palliative medicine and currently medical director for the Providence Center on Aging, reports that this training has been highly influential in educational programs for medical residents. A palliative medicine elective is now offered as part of the medical residency at Providence Portland Medical Center, with the Bayer program as a key element. Moreover, 100 percent of the staff who conduct the six to nine family conferences which take place each week at the Geriatric Assessment Clinic have been through the Bayer program. Dr. Baird feels their Bayer training has been decidedly positive and beneficial. One staff member, Jenell Neufeld, LCSW, echoed this sentiment in reporting how the Bayer training impacted her interaction with a family of Chinese-Cantonese heritage. It helped her to address their concerns about planning for advanced illness in a much more culturally competent and effective way. Time and effort put into the Bayer program to date is proving to be well worth it.

It's a privilege to share the successes of this program and to highlight the immensely beneficial and, at times, unintended results that have evolved out of providing a training forum for diverse professional groups practicing in the same geographic region. It is stories like these that uncover the life, joy, and energy that reside in the midst of death and distress-a paradox that underpins the very essence of palliative care and that epitomizes the strength of human compassion in action. By helping, educating, and supporting each other, we can continue to succeed in delivering patient-focused, holistic, palliative care. We are truly adding life to peoples' days, not just days to peoples' lives.

The Bayer program was developed as a joint venture of what is now the Institute for Healthcare Communication, a nonprofit group that conducts continuing education programs in communication skills, and Southern California Permanente Medical Group. It won the annual Sherman Award of Excellence in CME from the California Medical Association and is disseminated widely in the Kaiser health care system in California.

You can learn more about the Conversations at the End of Life program by visiting www.healthcarecomm.org and clicking on the "items for purchase" tab, or by calling the Institute at 800-800-5907. A set of materials (workbook, slides, video, and leader's guide) are available for $350. Additional workbooks are available at $15 each. Train-the-trainer courses can be arranged through the Institute or through Dr. Geoff Gordon at 503-494-9550.
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Providence Health System, a member of Supportive Care of the Dying: A Coalition for Compassionate Care, first participated in a Bayer Institute "Conversations at the End-of-Life" train-the-trainer program hosted in Portland, Oregon,in 2003. The training was funded and hosted by the Coalition, in part through a grant awarded to the Coalition from the Robert Wood Johnson Foundation (RWJF) Rallying Points program. Recognizing the value of the program, Providence Health System Portland Service Area formed a coalition with Portland Veterans Administration Medical Center to offer subsequent trainings, which were funded by a local coalition grant from RWJF and an internal grant from Providence Health System Portland Service Area.